It’s infuriating. Having people tell you what you can and can’t do with your baby. Having people say when he can and can’t eat. Having to rock your screaming, starving baby until his scheduled feed because of all the strict rules.
But more than anything else, it stung as their words snapped against my heart, when they told me No, or How, or When, or Where, or Jump.
It was a confusing and overwhelming place to be as a new mother. The incessant criticism, the routines, the schedules, the policies. It was enough to extinguish the little bit of excitement I could find in our first weeks with Max. But even more crushing than all of that, was the constant monitoring. I understood it was their job, but the lack of privacy, and never-ending need to check in with someone was absolutely suffocating.
Before we entered the NICU floor, we started the routine and made sure we followed all the rules. We had to check in with receptionist, confirming our relation, confirming our matching wrist bands, and calling his nurse to make sure it was okay that we see our child. Sometimes they said no, sometimes they were doing sterile procedures, and we weren’t allowed to enter the room. Sometimes those sterile procedures had nothing to do with Max, but another baby with whom he shared the room. Sometimes those No’s stung, other times they just floated by without notice. Before we entered we took off rings and jewelry, knowing no one could wear artificial salon nails, nail polish, or long sleeves. Only two family members could be on the visiting list to see Max, and those family members couldn’t be under the age of 18. Only two people could be at his bedside at one time, and only Cody and I were allowed to touch him. Every time we wanted to enter the NICU floor, we had to fill out a form, answering questions about cold symptoms, and if we answered yes for any of them, we had to wear a mask, and depending on how serious the symptoms were, we’d either be put on full isolation or denied admittance. We had to put our phones into plastic baggies, and we couldn’t remove them until we left the floor. Upon entering, we washed our hands and arms up to our elbows, then applied hand sanitizer to the same area, and were careful not to touch anything before getting to Max’s side. And sometimes, when neighbor babies went on isolation, dressing ourselves in gowns, gloves, and masks were a part of the routine too.
Once inside your babies room, which was shared with about 15 or so other patients, you couldn’t touch anything outside of your babies station. Even once you were within the imaginary lines of your babies assigned cubicle, if you touched anything, his crib, a wire, the seat, your face, hair, or clothes, you had to either wash your hands or use hand sanitizer. By the end of the first week, my hands were so dry and cracked, they would bleed every time I tried to use them.
We learned all about hospital policy. Emergency patients trump stable patients for procedures and scans. Logistically, it made sense. But to me, as a mother, the injustice of watching my baby go another day under sedation, laying limp, seemingly lifeless, his cries being strangled off by a breathing tube he no longer needed, made me want to tear out every one of the staff’s hair.
We learned that nurses make mistakes. They were late on medications. They forgot to tape down catheters, which were kicked out (twice). They got lost during a patient transport. They miscommunicated a lot of things. We were frustrated. A lot.
We learned that doctors don’t know everything. Plans of care could have been made 100 times better in a lot of scenarios. Decisions could have been made hastier. Help could have arrived sooner. We were frustrated. A lot.
We learned that things fall through the cracks sometimes, and you can’t rely on your doctors to keep everything in check.
We learned that you are your biggest advocate, and sometimes doctors don’t know what’s best.
We learned that if you feel like something is wrong, without concrete evidence, to scream your head off until someone listens to you and does something about it.
But more than all the negatives, we learned a lot from the NICU.
We learned that even though it was tough, having trained professionals by your side during the first weeks of motherhood is a Godsend. So many opinions, so much help, so much extra care and tips. I was able to root out what worked best for Max from countless women who took care of babies for a living, all with different styles and techniques. I got to handpick the best of the best from the best of the best. We got a lot of supplies to which we wouldn’t have otherwise been exposed. Today, we have more medical supplies than I’d like to organize or think about.
We learned that there are truly compassionate and caring people in this world dedicated to saving lives, and making those lives more comfortable while under their care.
And most importantly, we learned how truly blessed to be where we are today…because we also learned that without the healthcare and technology available in the present moment, and without the medical professionals that saved our baby’s life, he would’ve been just another statistic, in a book somewhere, as a baby that didn’t survive past his first day of life because they didn’t have the means or the knowledge necessary to keep him alive then.
We learned that we are truly blessed to be fearfully, and wonderfully made at the time and place we were meant to enter this world. We learned to give thanks to God for EVERY little thing He has given us.